Genetic Aortic Disorders Association Canada

02/28/2026

At GADA, we’re proud to recognize Rare Disease Day and stand with the global rare disease community. Learn more through Canadian Organization for Rare Disorders.

Join us in lighting up for Rare Disease Day! https://www.raredisorders.ca/rare-disease-day

Genetic aortic diseases are rare:
• Marfan syndrome affects approximately 1 in 5,000–10,000 people.
• Loeys-Dietz syndrome is estimated to occur in about 1 in 50,000 people.
• Vascular Ehlers-Danlos syndrome affects approximately 1 in 150,000 people.
• Arterial tortuosity syndrome occurs in roughly 1 in 1,000,000 people.
• The prevalence of non-syndromic aortopathies associated with genes such as ACTA2, MYH11, and MYLK remains unknown.
Individually, these conditions are rare and likely underdiagnosed. But collectively, rare diseases are common.

Today, we recognize and celebrate the strength of the 1 in 12 people worldwide living with a rare disease.

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02/27/2026

With the Olympics sparking conversation about sports and physical performance, it’s a timely moment to talk about what exercise means for people living with genetic aortic disorders. For those managing an aortic condition, understanding what safe physical activity looks like is especially important. 🏅

That’s why we’re pleased to share that our recent webinar—Healthy Living and Aortopathy: Incorporating Exercise with an Aortic Disorder, led by Dr. Nathaniel Moulson—is now available to watch on YouTube.

This session explores:

✨ Safe and effective exercise for people with genetic aortic conditions
✨ Current clinical guidelines
✨ Gaps in evidence and emerging research
✨ Practical advice for patients, caregivers, and clinicians

▶️ Watch the full webinar: https://youtu.be/1YOadTXtqyo

On January 22nd GADA hosted a webinar titled 'Healthy Living and Aortopathy: Incorporating Exercise with an Aortic Disorder' led by Dr. Nate Moulson.For indi...

02/10/2026

Acute type A aortic dissection (ATAAD) is a life-threatening emergency that requires immediate surgery and often involves the aortic root. There has long been debate over the best surgical approach to repair the aortic root. In this large meta-analysis, researchers reviewed data from 40 studies involving 11,734 patients to compare two strategies: aortic root replacement (ARR) and the conservative root approach (CRA).

ARR includes two procedures:
Bentall procedure: replacement of the aortic root and valve using a composite graft
Valve-sparing root replacement (VSRR): preserves the patient’s native aortic valve

CRA involves:
Preserving and reinforcing the native aortic root
Resuspending the aortic valve or replacing it with a mechanical or biological prosthetic valve

🫀 What did they find?
Overall survival was similar between ARR and CRA
ARR was associated with a lower risk of reoperation compared to CRA
Among ARR techniques, VSRR was associated with better long-term survival compared to CRA, while the Bentall procedure was not.

👉 Why this matters:
These findings show that there is no one-size-fits-all approach to aortic root repair in ATAAD. Each strategy has benefits and trade-offs, and surgical decisions should be tailored to the individual, especially for patients with underlying genetic or connective tissue disorders.

Read the full article here: https://pubmed.ncbi.nlm.nih.gov/41353548/

02/05/2026

Register now for the free, virtual Rare Cardiac Conditions Conference, hosted by the University of Ottawa Heart Institute on February 27. This one‑day event features expert sessions on rare cardiac conditions, including a Genetic Aortopathy session with MAC member Dr. Julie Richer. 💻🧬

👉 Learn more & register here: https://www.eventbrite.com/e/rare-cardiac-conditions-conference-tickets-1736180395299

01/28/2026

Save the Date!

The 4th Heritable Aortic Disorders (HAD4) Symposium is coming to Vancouver on May 22–23, 2026.

This two‑day, in‑person event brings together leading clinicians and researchers (Day 1) and offers dedicated learning and workshops for patients and families (Day 2).

📍 UBC Robson Square, Vancouver, BC
📅 May 22–23, 2026

🔗 Learn more via the HAD website: https://www.heritableaorticdisorders.com/

Registration is not open yet, but will be opening soon—mark your calendars and stay tuned for more details.

01/27/2026

GADA Canada is deeply grateful to the family and friends of Elias Dourakis who came together to honour him through more than $3,500 in donations made in his memory.

This generosity supports vital research and education initiatives as well as improved care for individuals and families living with genetic aortic disorders. Thank you to those honouring Elias Dourakis, your donations support initiatives that improve outcomes for Canadians with genetic aortic disorders and help prevent the unnecessary loss of life.

01/15/2026

On January 22, 2026 GADA will host a special webinar titled ‘Healthy Living and Aortopathy’ led by

Attendees will learn about the contemporary evidence and recommendations for exercise and aortic disorders, while also gaining an understanding of the clinical guideline recommendations, gaps in evidence, and emerging data and considerations.

Register now to secure your spot and to submit your questions: https://us06web.zoom.us/webinar/register/WN_LFyA56_6SAeWBLy35p69KA

01/12/2026

While stress cannot always be avoided, small, intentional strategies can help reduce its impact over time. For individuals living with genetic aortic disorders, these approaches can support both emotional well-being and overall health.

Strategies may include:
• Gentle breathing or grounding exercises
• Creating predictable daily routines
• Connecting with trusted family members, friends, or support networks

These tools are not intended to eliminate stress, but to create moments of calm, stability, and a greater sense of control.

To learn more, watch GADA’s webinar with Genetic Counsellor Gretchen McCarrick, “Navigating Mental Health When Living with Aortic Disease.” The session explores the connection between physical and emotional well-being, ways to navigate anxiety, grief, and trauma, and practical, evidence-informed tools to build resilience.

On November 5th, GADA hosted a special webinar titled ‘Building Bridges: Navigating Mental Health when Living with Aortic Disease’ led by Genetic Counsellor,...

01/09/2026

As the New Year begins, conversations around well-being and self-care often take centre stage. For individuals living with genetic aortic disorders, self-care is not about resolutions or quick fixes—it is an important part of supporting long-term cardiovascular health.

Self-care can include staying engaged in routine medical follow-up, understanding your condition, managing stress, and building habits that support both physical and mental well-being. These everyday actions, guided by medical care, play a meaningful role in living well with a genetic aortic disorder.

Throughout January, GADA will be sharing evidence-informed content focused on patient-centred self-care, highlighting practical strategies and trusted information to support individuals and families affected by genetic aortic disorders.

Save the date for our upcoming webinar with Dr. Nathaniel Moulson, focused on exercise. This webinar will take place on January 22, 2026 at 7:00pm, registration details to be released in the coming weeks.

12/29/2025

Thanks to the generosity of our donors, we are only $1000 away from reaching our goal of $10,000 by December 31st.

Every donation helps support GADA’s mission of strengthening research, awareness, and care for families and individuals living with genetic aortic disorders.

Donate today and help us reach our goal!

12/24/2025

As the year comes to a close, we wish you and your loved ones a warm and peaceful holiday season.

Your support—through learning, sharing, participating, and giving—has helped strengthen awareness, research, and care for individuals and families across Canada living with genetic aortic disorders. We are deeply grateful to be part of such a dedicated community.

As part of our 2025 Year-End Holiday Drive, we set a goal of raising $10,000 to support research partnerships, awareness initiatives, and improved patient care. Thanks to the generosity of our community, we are now just $2,000 away from reaching this goal.

Every contribution helps move us closer to earlier detection, more precise care, and fewer preventable tragedies.

Help us cross the finish line before December 31.